Re: Cretinism and Hypothyroidism

[Guest guest]

Dear Chris

I would like to know what your treatment regime is including how long you have

been taking replacement hormones and what kind and some your personal experience

with hypothyroidism? I have only ever met one person, male who has the same

condition as me, funny thing is, in my first year at University, I was one of

two males in a class of women so we sat next to each other, when I got to know

him, he had the same condition as me! Like meets like they say, in life.

How much and how often and for how long and why would be really helpful please?

With respect

Inam

>

> Hi Inam

>

> As well as looking at adrenal insufficiency, have you looked into other

hormonal deficiencies, such as low testosterone? With regards to the

deficiencies of nutrients which may affect thyroid utilisation, have you been

tested for any of these or can you ask your GP to test you? Do you have a list

of everything that may affect the utilisation of thyroid at a cellular level?

>

[Guest guest]

Hi Inam

Do these changes feel good or bad?

I hope they are changes for the good. I have experienced numerous changes

myself when starting different hormones - these were changes for the better

though felt strange at the time

chris

>

> Gosh, there is certainly some work to be done, please bear with me with all

these questions and as soon as I can get a GP to help me with tests, I will be

posting everything online. Strange changes are taking place in my body, strange

sensations, I'm tasting food better, thinking different, in fact, my whole

character, persona, sense of

[Guest guest]

Hello Inam

I am more than happy to share my experiences of hormonal treatment with you.

>> I would like to know what your treatment regime is including how long you

have been taking replacement hormones and what kind and some your personal

experience with hypothyroidism?

Right, ok I'm on:

DHEA - compound from a pharmacy

Pregnenolone - as above

Growth hormone - Omnitrope brand

Erfa Thyroid

Testosterone gel - compound from a pharmacy

Hydrocortisone - West-ward brand, sometimes Erfa brand

Arimidex ( to control estrogen levels from the testosterone)

I started most of these in May, except for testosterone which I started in

November.

I am on these because lab tests and symptoms indicated I needed them (and

treatment has helped me, confirming I needed them?). I suffered for many years

feeling bad all the time , and it is amazing how things can start to change -

very quickly - if you get the right treatment.

I sought help as I felt bad all the time and no matter how much rest I got, no

matter how much counselling I had or which psychological techniques I applied,

psychiatric drugs, no matter what things I tried changing in my life, nothing

worked to make me feel better. That is about 12 years condensed into a

paragraph. My problems seemed to really develop in 1998, after taking

amitryptiline antidepressant.

I have a few conditions including 'sleep apnea' (i stop breathing in my sleep,

so need a machine to keep my airways open at night - CPAP Machine). I also

have 'metabolic syndrome' http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004546/ ,

low testosterone can be a factor in metabolic syndrome and can perhaps be

reversed by exercise and optimal testosterone. Both conditions can be linked

to low testosterone, possibly hypothyroidism.

>some your personal experience with hypothyroidism?

Well I don't know where to start really; I am also not sure that hypothyroidism

is my main problem as I have other deficiencies (testosterone, cortisol). Some

people just seem to need one or two hormones and do fine on them, but I need

more than that. I'd be here all night if I wrote about everything and some of

it is quite personal (i feel quite unwell quickly if I don't take the meds I

need). I have been down the route of being told all my problems were

psychological,take these anti depressants etc (tried about 10 types and none of

them really helped that much). I had about 4 years of 'therapy', read every

self help book I could, saw gosh must be at least 5 NHS psychiatrists (might be

more, i've forgotten !), 1 private psychiatrist, but nothing helped, I just

ended up blaming myself for all the thoughts I was thinking (though they were

automatic thoughts, and I had no control of them, as I now realise). If only I

could think the right thoughts, i'd be fixed! Didn't work like that....

Basically after much stress in my 20s, my body seemed to give up, and some years

later I ended up on hydrocortisone. For me, I think my'breakdowns' were caused

largely by adrenal issues, since hydrocortisone helps me a lot, and if i don't

take it, i end up in quite a bad way quite quickly (same with thyroid hormone).

After not getting help on the NHS, I decided to see a specialist, who is

treating me by looking at blood tests and symptoms.

I am slowly improving, but it can be a slow process, and not all plain sailing.

But I'm getting there.

> How much and how often and for how long and why would be really helpful

please?

I'm just on physiological doses of things, eg 1 gram of a testosterone gel

containing 10% testosterone (giving 100mg of Testosterone, of which about 10%

will be absorbed). I take erfa thyroid, i'm currently on 60mg, and working up

to a higher dose slowly. I am trying to find the right dose for me on a number

of things like hydrocortisone.

As mentioned I had symptoms of low DHEA, low thyroid, low cortisol, etc, and my

blood tests backed this up.

I think I gave you the link to the hertoghe questionnaire? If you look at say

DHEA deficiciency on that questionnaire, then I had the symptoms of DHEA

deficiency, and cortisol deficiency (etc) too and the blood tests backed this

up, so this is why I'm on these different meds. I suppose I could look at it

and say I shouldn't need to be on all this stuff at age 32, but if I wasn't on

it, my body would not be making enough itself, and I 'd have no quality of life

at all. life wouldn't be worth living, so I am glad I can have some quality of

life now that I get treated.

Like you by the sound of it, I've had enough of the NHS. I am seeing a private

doctor and paying for my own treatment.

I am sorry this isn't as long and as detailed as it could be. Please feel free

to email me off line, I am happy to discuss it in more detail.

Best regards

Chris

[Guest guest]

Hi Chris

Sorry for not replying sooner. I'm OK, just having a few problems with adjusting

to my new regime, including an even lower dose daily of 200 mcgs. I have

definetly slowed down and things are difficult to understand. My GP says this is

who I am and not the person I was for the last 10 years who was taking more

thyroxine than needed!

I have been reading your previous email with interest. I can directly relate to

some of your experiences. I avoided the counselling, psychotherapists,

psyhchiatrists and the antidepressants. I went for holistic herbal approaches in

trying to make myself function and I did succeed, however, getting the right

brand of levothyroxine and the right amount is a prerequisite. Its no good

trying to nourish your adrenals if the thyroxine isn't there to make them work.

Very interesting indeed. Certainly opened more doors for me to walk through.

I'm certainly going to try what you are taking and doing because it has been a

very tough time for me probably because I went through it all alone and was

abandoned by those that should have known better.

Even if I do get totally better, I don't think I will know what to do because

I'm conditioned to being who I am. Quite reclusive. In fact, extremely

reclusive.

The Eltroxin is different from the 25 Mcgs Goldshield. The Goldshield is

definetly the best. The Almus isn't too bad. The TEVA Branded thyroxine is

simply not thyroxine by any standards and I know of one person who complained

that her head feels like it is under pressure after taking 100 mcgs of TEVA

thyroxine. About a year later, she suffered a stroke. This person has niether

drank or smoked all her life and has been very active. I took the TEVA brand and

experienced pressure build up in my head the very next day after taking it. I

immediatly stopped it. Why can't they make thyroid hormones properly. I went to

my GP and he insulted me like I am wasting his time, but its my time that has

been wasted, and the fact that he is sat there is because of people like me.

Patients.

I'm a deeply hurt person after all those years with the NHS. It runs deep.

Because so much was so uneccesary for so long, for so many people. Including my

little ones. They mismanaged my treatment, overdosed me for so long and then

they turn around and say I am abusing levothyroxine for its amphetamine like

stimulant effects! Why don't they open their eyes and examine me for signs of

excessive thyroid hormone use? Why? Because they haven't got a clue what to

check.

I 've no idea what some of the things are that you are taking. I know about

testosterone. I am unfamiliar with cortisol, hydrocortisone, DHEA but that will

change soon.

I really appreciate your time and advice and support. It's very important to me.

I must admit, 350 to 380 mcgs was alot to be taking. But is it, considering that

I liked to graft, weight lift, run, long long walks, daily exercise, read, DIY

etc. What am I now, doing far less since they restricted and stopped my medicine

back in July.

But you know what is putting a smile on my face right when I look to the

left, though the kitchen door, on the shelf I see a stockpile of my 'life', for

which I don't have to beg anymore. ))

The Best Of Regards

Inam

>

> Hello Inam

>

> I am more than happy to share my experiences of hormonal treatment with you.

>

>

> >> I would like to know what your treatment regime is including how long you

have been taking replacement hormones and what kind and some your personal

experience with hypothyroidism?

>

>

> Right, ok I'm on:

>

>

[Guest guest]

Now I'm feeling hypothyroid, even though taking 200 daily. Face becoming puffy,

going yellow, difficulty thinking, focusing, etc, I cannot believe how rapidly I

begin to fall apart after lowering my dose. Now, I know I must make an increase

otherwise I'm not going to be able to respond to anyone or make sense out of

this conversation.

How are you keeping?

REMOVED PREVIOUS MESSAGES

Moderator

[Guest guest]

Hi

I hope you dont mind me sticking my nose in here but I was very interested in

your comparison between thyroxine brands.

As someone who has had huge problems taking thyroxine and now taking Teva, for

no other reason than I seem to be unable to 'switch' from brand to brand as the

NHS seem happy for us to routinely do unless we specify it as a problem !

I have an Endo appt. soon and will be trying for new meds and wonder what you

thought about Eltroxin.? did it make you feel less 'toxic' or anything else. Or

Goldshield which I gather you prefer. Did you experience any side effects when

taking that.

It would be so helpful to hear your experiences with these meds and thankyou

>

> Hi Chris

>

> Sorry for not replying sooner. I'm OK, just having a few problems with

adjusting to my new regime, including an even lower dose daily of 200 mcgs. I

have definetly slowed down and things are difficult to understand. My GP says

this is who I am and not the person I was for the last 10 years who was taking

more thyroxine than needed!

>

>

[Guest guest]

Hi Inam

I hope the increase helps you feel better soon

Chris

>

> Now I'm feeling hypothyroid, even though taking 200 daily. Face becoming

puffy, going yellow, difficulty thinking, focusing, etc, I cannot believe how

rapidly I begin to fall apart after lowering my dose. Now, I know I must make

[Guest guest]

Hi Inam

> Sorry for not replying sooner. I'm OK, just having a few problems with

adjusting to my new regime, including an even lower dose daily of 200 mcgs. I

have definetly slowed down and things are difficult to understand. My GP says

this is who I am and not the person I was for the last 10 years who was taking

more thyroxine than needed!

Perhaps you do need more than 200mcg; are you keeping a diary of what you take

and how you feel? I find this is the only way of making sense of anything.

> Very interesting indeed. Certainly opened more doors for me to walk through.

Yes there are always options and hope for us, even if it means combining several

meds, therapies, or different types of medicine: western, avuryeda (sp), chinese

etc.

> Even if I do get totally better, I don't think I will know what to do because

I'm conditioned to being who I am. Quite reclusive. In fact, extremely

reclusive.

This may change when you feel better. When I first started testosterone, for

instance, i felt overwhelmed as i felt a lot better . Sometimes during such

changes it is good to get some help and support from someone - this has helped

me.

> The Eltroxin is different from the 25 Mcgs Goldshield. The Goldshield is

definetly the best.

Ok I thought they were the same, thanks for clarifying!

> I'm a deeply hurt person after all those years with the NHS. It runs deep.

Because so much was so uneccesary for so long, for so many people. Including my

little ones. They mismanaged my treatment, overdosed me for so long and then

they turn around and say I am abusing levothyroxine for its amphetamine like

stimulant effects! Why don't they open their eyes and examine me for signs of

excessive thyroid hormone use? Why? Because they haven't got a clue what to

check.

So many people suffer needlessly. It's tragic:-(

> I 've no idea what some of the things are that you are taking. I know about

testosterone. I am unfamiliar with cortisol, hydrocortisone, DHEA but that will

change soon.

If you can afford it and like reading, I would recommend buying Dr Hertoghe's

book.

http://www.amazon.co.uk/Hormone-Solution-Dr-Thierry-Hertoghe/dp/1400080851/ref=s\

r_1_1?ie=UTF8 & qid=1322152702 & sr=8-1

> I really appreciate your time and advice and support. It's very important to

me.

It's ok :-)

> I must admit, 350 to 380 mcgs was alot to be taking. But is it, considering

that I liked to graft, weight lift, run, long long walks, daily exercise, read,

DIY etc. What am I now, doing far less since they restricted and stopped my

medicine back in July.

I guess some people do need high doses of medication to function, everyone's

different.

> But you know what is putting a smile on my face right when I look to

the left, though the kitchen door, on the shelf I see a stockpile of my 'life',

for which I don't have to beg anymore. ))

This must be such a relief, and hopefully you can get on the right dose for you,

and if there are any other deficiencies, get those corrected, too. Did you do

the questionnaire I think I mentioned to you?

chris

[Guest guest]

> > Hi Chris

> >

> > Sorry for not replying sooner. I'm OK, just having a few problems with

adjusting to my new regime, including an even lower dose daily of 200 mcgs. I

have definetly slowed down and things are difficult to understand. My GP says

this is who I am and not the person I was for the last 10 years who was taking

more thyroxine than neede

> >

> >

>

what a cheek to insult you like this, you need to change your GP and find

someone who has respect and cares about your wellbeing. This is a poor excuse

for not treating you properly.

I got fed up with the change of brand every time, it was impossible to stabilise

on it, and decided to self treat and get some control over my life. I am much

better because I am not a victim any more.

[Guest guest]

I hope you soon start to feel better again Inam once you

increase your dose back to where you felt better previously. Keep in touch, and

let us know of your progress.

Luv - Sheila

Now I'm feeling hypothyroid, even though taking 200 daily. Face becoming

puffy, going yellow, difficulty thinking, focusing, etc, I cannot believe how

rapidly I begin to fall apart after lowering my dose. Now, I know I must make

an increase otherwise I'm not going to be able to respond to anyone or make

sense out of this conversation.

How are you keeping?

[Guest guest]

Hi jenny

Unfortunately, we are all different, and what works for one

doesn't necessarily mean it works for others. The only way to go is to try the

different brands yourself and see which is the one that works best for you.

Then, you must ask your doctor to write that particular brand of levothyroxine

on the prescription form, and the pharmacist has to give you that particular

brand, and not any other brand. Doctors cause a lot of problems for us because

they simply writing 'Levothyroxine' on the prescription form, which means that

any pharmacist will give you whatever brand he happens to have in stock at that

time.

Luv - Sheila

I hope you dont mind me sticking my nose in here but I was very interested in

your comparison between thyroxine brands.

As someone who has had huge problems taking thyroxine and now taking Teva, for

no other reason than I seem to be unable to 'switch' from brand to brand as the

NHS seem happy for us to routinely do unless we specify it as a problem !

I have an Endo appt. soon and will be trying for new meds and wonder what you

thought about Eltroxin.? did it make you feel less 'toxic' or anything else. Or

Goldshield which I gather you prefer. Did you experience any side effects when

taking that.

It would be so helpful to hear your experiences with these meds and thankyou

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[Guest guest]

MODERATED TO REMOVE DOCTORS NAMES (Can't mention names without first asking

their permission) and to remove most of previous messages already read. Sheila

____________________________________________________

Definetly not taking enough T4. I have started supplementing again with vit and

minerals as Shiela has mentioned but it has made little difference. I increased

my T4 from 200, to 225 now on 250 and feeling like I'm coming out of myself.

I have always eaten very well and take a variety of supplements that I have

tried and tested over many years so deficiency is highly unlikely.

I'm still not sure where I am going to find a new GP because I lost complete

faith in them.

I wrote to the GMC tons of times, and I got in touch with NICE and they advised

to get in touch with the Department of Health. NICE were very nice literally and

supportive.

I think taking 250 upto 350 mcgs and more under the right conditions is safe for

a tiny minority of patients like me. I believe this.

If it wasn't safe, then how come I am still alive after so many years. The only

times I suffer is on inadequate amounts.

Why do certain pharmacists and GPs, like one of my coisins suggest to me that

200 is not a high dose?

I think in my case, I have a serious issue with my pituitary, as a GP suggested

that if it goes wrong, you tend to take higher doses of T4.

I think very active people who exercise alot are OK taking high doses of T4,

because they use it up.

When I was a child on 225 mcgs daily, a GP told me that as I grow older into

adulthood, there may be an issue with dependence, addiction.

Also, another brilliant GP, Dr H, Keighley, and the late Dr , Endo, Airedale,

was happy with me increasing my dose when I was only 11!! They gave me my T4

unrestricted and it was me that proposed to them the idea of making careful and

controlled increases and decreases to dose to meet needs and they were very

happy with me doing this. In fact, my Endo was impressed that I took the

initiative instead of suffering.

I have restarted my dietary supplements and here is a list if it is at all

useful:

Vitamins A, C, E, Selenium,

Ginkgo Biloba,

White Tea

Peppermints Tea

Soyo Lecithin

Calcium

Zinc,

Copper,

Amino acids,

Green Tea

Hemp Tea

Hibiscus

Dr Stuarts Liver Detox, Detox and Skin Purify

Wheatgerm, (works wonders for the heart, gives me my folic acid,

Vitamin B complex,

Brewers Yeast,

Yogurt

Almond Oil

Thyme

Oregano

Basil (use herbs with caution and in small amounts)

Lavender, Lemongrass, incense, Chamomile essential oils, externally and

very occasionally in tiny tiny doses internally but I do not reccomend anybody

doing this. But it works brilliantly.

Biotin,

RoseHips,

Omega 3,6,9, from codliver oil

Molasses

minerals (use with caution and not everyday)

I take it all seperatley and have included iron but because I eat my greens and

reds, I know I am getting enough.

I can't deny that I feel much better on high doses of T4 and I feel no symptoms

of toxicity. I know that when I do work, I work hard, when I train, I train

hard, I walk miles and lift weights so I think I just use it all up. But all

this grinds to a halt on inadequate doses, like it was for years. I only started

living life since 2004 when I took the intitiaive and started to increase my

doses because life had become so bad, I decided, whats the worst that will

happen, I'll die, but I thought, so be it! But since then I haven't died. I'm

still alive. Perhaps I did push it too far up, but I was living.

Right now, I do 225 in the am, then 25 before I sleep, I'm thinking of upping

this too. And despite wha anybody says, T4 absolutely does not work like an

amphatamine or caffeine, there may be vague parralels but the substances are a

world apart. I tried drinking when I realized and accepted that the marijuana

route is not viable or reliable! I mean, where exactly am I going to get high

CBD ratio stuff in Britain?! And breaking the law doesn't appeal to me which I

respect. Besides, couldn't afford it. Wish I could though. I know of a cancer

patient who grows his own and says it works better than chemo!! I bet it does

too. ))

I found Rose Wine the best for physical symptoms, it worked very well actually

but I found myself drinking the whole bottle and then falling over so I have

restricted it. I tried all manner of drinks but they didn't go down to well as I

am sure you can imagine.

I know the right level of nutrition is in place so there is no question of

deficiencies leading to poor utilization of t4.

I went through the questionaires on adrenal insufficiency but I was OK. I have

expereinced those problems but have always managed to deal with it nutritionally

and it does work.

Right about now, I am usually going through a great deal of stress because as

has been the case, I am usually running out of meds but things are different

now. And it feels brilliant.

Wishing you well and seasonal greeting to you and all.

Best Wishes

Inam

>

> Hi Chris

>

> Sorry for not replying sooner. I'm OK, just having a few problems with

adjusting to my new regime, including an even lower dose daily of 200 mcgs. I

have definetly slowed down and things are difficult to understand. My GP says

this is who I am and not the person I was for the last 10 years who was taking

more thyroxine than needed!

>

>

>